With EoE, Allergies, Asthma and a G-Tube

Charlie had a secret agent spy birthday party this year. A month ahead I asked him if he wanted to invite any friends from school, he said no. He only wanted his family. GREAT! 🙂 I did it up right for him though. We had the party the weekend my in-laws came to visit.

Every secret agent needs a badge and disguise. Every, secret agent

EveryoneAfter everyone had their gear on we head to the basement for the secret agent spy obstacle course.Crawl through the tunnelBalance across the plank (front porch Santa decoration)

Next we went upstairs and they had to read a message in the mirror that had been printed backwards. We also played a game where you put some items on a tray, let them study them, then have them look away as you sneak out one or two of the items. They then have to tell you what you removed. The last game was a treasure hunt. I put big question marks around the house. They were given clues at each question mark that led them to the next one. The final mark is where Charlie found all his presents!

Then came the cake! I used Bob’s Red Mill chocolate cake mix. Instead of egg I used the EnerG egg replacement. To get the round shape I bought a Wilton’s sports ball cake pan. I was quite proud of myself. I thought it turned out pretty good. We are able to use regular Betty Crocker frosting. I don’t like to use fondant, frosting just tastes better. We go for taste, not for looks. (Charlie is shirtless 90% of the time no matter what season it is)

That night for dinner we let Charlie eat his very own lobster tail. It’s one of his more recent foods he just got back into his diet. When we told him we bought him one for dinner and he asked if he could eat it the next day instead because he didn’t want to have a reaction on his party day. Hearing that made me sad. Nathan said he’s just a smart boy not wanting to ruin his party. We reassured him that he would be just fine to eat the lobster. I’ve never seen someone eat a lobster tail so fast. Happy 6th Birthday Charlie!

Something that’s been bothering me lately is the boys are hungry and hungry right now. That’s not the problem, the problem is that there’s no quick fix solutions.

Here’s a yogurt.

Here’s an apple.

“Mom, I’m still hungry”

They want meals. You can’t just quick grab a meal and throw it together. Breakfast, lunch and dinner, if you don’t have a meal plan sketched in your head for each day you’re scrambling. Then at mealtime the kids are getting cranky it just makes it harder.

Oh how I long for the day to just boil some pasta with butter and cheese, or make one kind of pancakes, or be able to make hamburger helper! Well, not sure I would feed my kids the last one but it would be quick and easy! Even to open a can of spaghettios and serve it would be wonderful. To be able to pour a bowl of cereal. Make a peanut butter and jelly sandwich, or to have bread to make a sandwich.

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Gage loves pasta. Being wheat and rice free his only other option is corn pasta. We have removed corn. So now what? I looked at quinoa pasta but it has rice in it. Then, our last trip to the “stinky” food store I found black bean pasta! It’s called Explore Asian Organic Black Bean Spaghetti.

The first night I used the pasta I made our version of Kraft’s Cheesy chicken and broccoli over rice. The only thing I swapped out of the recipe was the black bean pasta for the rice. The boys loved it. I had never made it for them before. Gage loved his new pasta. Awesome – we have our pasta replacement!

Yeah right! Things are never that easy for us.

Right after dinner we were rushing our bedtime routine and I put the boys in the shower. I turn Gage around to wash his hair and notice hives all over the lower part of his face. UGH I dash out into the family room and quickly explain the hives to Nathan, grab the Benadryl and head back to the bathroom. The hives appeared to be the only reaction. So darn frustrating. He’s not allergic to black beans, is he? I had used chicken broth and was hoping it was something in that. Our first allergist told me if they have a reaction still try it 2 more times to make sure they are truly allergic. Obviously if it was anaphylactic we wouldn’t try it again. So I was determined this pasta was safe! A week later I decided we would try it again. I gave the boys their dinner and explained to Gage he could only eat a few noodles and we needed to wait to see if he broke out in hives. Ten minutes went by and nothing happened. So we let him eat the pasta with the rest of his dinner. Sure enough after he was done with dinner the hives popped up. We washed him off and they started going away. We thought maybe it was more of a contact allergy. The boys started playing and about a half hour passed when Gage started coughing. He kept coughing and coughing and said his chest was tight. He was still reacting to the pasta! So we gave him some Benadryl. He didn’t stop coughing and we ended up having to give him an albuterol breathing treatment. Once that was done he was better. How strange though it was so delayed.

I’m pretty bummed the little guy doesn’t have any pasta. He loves pasta. We’re also confused as to why he’s reacting to the beans. He eats lima beans, kidney beans and pinto beans with no problems. I guess it’s just one of those weird allergy things. Put black beans on his list!

While the boys were eating I told Nathan to taste the noodles. He asked if they were safe for him and I said yes. Just as he touched the noodle to his tongue it hit me I had boiled them in chicken broth! I yelled spit it out spit it out! He ran to the sink and rinsed his mouth out. I about did him in!

So to put an end to the black bean pasta I finished it off the next day.

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I’ve come across a blog that lists tons of allergy type blogs! There’s just a straight up list of them. You can click on any to find some helpful mom tips when dealing with allergies, asthma, eczema and EoE.

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My baby turns 6 today! He has lived in 4 different houses, 3 states and lost his dog already. I love my Charlie to pieces. He is so adaptable, genuinely kind-hearted, super inquisitive, full of life and ready for anything.

Charlie is smart, we knew that from the beginning. He over thinks everything. Having a conversation with him you feel exhausted afterwards because you have covered every possible scenario that could accompany the single thought that sparked the topic. When we go to the library he doesn’t pick out stories. He picks animal encyclopedias, kid dictionaries and how stuff works type of books. I asked him if we could just read a story one night and he replied “No mom, I was to learn about stuff.”

Charlie has the biggest heart of any kid I know. He told me while I was pregnant “Mom, it’s ok your butt is getting bigger and your belly. I just care about you and the baby and I just love you.”. He’s always wanting to help people. He’s also become quite the gentleman always holding the door for everyone. When he talks to Tinleigh you can see the love in his eyes and how gentle he is with her. He hugs and kisses Nathan and I every single time we leave the house. I’m not joking, every single time. Doesn’t even matter if it’s just to run to the store. I’m quite proud of the little man he’s becoming. I feel like I’m doing something right.

Charlie has accepted his allergies and that’s just how it is. He’s never angry about them. He doesn’t dwell on it, ever. When he gets to eat a new food and Gage doesn’t he keeps to himself. He sometimes won’t eat a certain food in front of Gage because he knows Gage likes it and he doesn’t want to hurt his feelings.

Charlie, we believe, will be in politics. He will debate you on anything and please you at the same time. He is a charmer, yet always gets his point across. I see big things for this little guy. Currently though he thinks he’s a secret agent spy. He’s always telling me his boss called and told him this and that. Sometimes it freaks me out a little.

I can’t believe my baby is 6! I loved baby Charlie so much. I’m sure it’s all so vivid in my mind because he was my main focus at that time. He was such an enjoyable baby. At the same time I can’t wait to see what he becomes. His mind works in such crazy ways, he’s loving, 100% energy at all times and has the biggest imagination.

Charlie is also a huge fan of nature, every little thing in it. He builds creature homes by the creek. Will pick up and inspect any bug he can catch. A true animal lover. He’ll tell you that a skunk isn’t the only animal that sprays. He knows some animals use a radar system to find food. I love how their little brains are sponges and just absorb everything they learn.

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When we make the boys pizza I like to cut up tiny pieces of chicken and hide it in the sauce under the cheese. That way they’re getting protein and we don’t have to argue about it. Gage can now eat Bob’s Red Mill all-purpose flour since adding potatoes to his diet. We made his pizza crust using that as the main flour for the fist time. When Nathan took the pizza out of the oven I asked him if the crust was gooey, using egg replacer it typically is. Next thing I know Nathan cuts off a small piece and shoves it in his mouth! I about had a heart attack and yelled what are you doing?! He looked at me puzzled then realized what he had done. He makes a mad dash for the sink and spits it out. Luckily he only had the crust and not a piece with chicken. Chicken trauma averted.

I have bad luck. That’s just how it is.
My birthday in December – completely embarrased at lunch with singing from the wait staff then served cake and ice cream that I couldn’t even eat because of my new Tinleigh diet. Came home to find the basement filled with sewage water. Horrible birthday.
Our anniversary on New Years Eve – Had to leave family and fly back to our house which made me sad. Brushing my teeth that night Nathan tossed something on the counter and it scared me. I jabbed my toothbrush under my tongue clear in the back of my mouth. Blood gushed. The next day I couldn’t talk, turn my head, open my mouth or eat.
This past week – Monday morning Charlie informed me his tennis shoes were too small. Why couldn’t he have told me this on friday? I felt his toe and sure enough they were clear at the end. So after school I drove all three kids to the mall an hour away only to find out they had removed stride rite since we were there last. Are you kidding me?! Both boys have wide feet and stride rite has wide width shoes. I call Nathan and he suggests I try the kind of nikes he has because they are wider. So we find a pair and they fit! We then head to the one food place there the boys can eat only to find it’s closed. I felt defeated.
Tuesday charlie wore his new shoes to school. I took Gage to a local small town shoe store that I found out carried stride rite. They didn’t have wide width in Gage’s size but we did find some new balance that worked! Tuesday afternoon Charlie showed me the bruises his new shoes caused on the tops of his feet.
Wednesday Gage, Tinleigh and I drove an hour back to the mall to return the shoes. We also stopped at Gage’s special food store. Found Gage some black bean pasta since he can’t have wheat, corn or rice pasta. Picked Charlie up from school and took him to the shoe store in town. They didn’t have any shoes to fit him. That night at dinner the boys had the black bean pasta. Gage broke out in hives.
Thursday – I got the dreaded phone call from Gage’s school. Nathan came home after lunch for Benadryl because of cross contamination at the restuarant. Charlie got a few blisters on his bottom lip during dinner. Wasn’t anything major though.
Friday – I had to take Tinleigh to the doctor for a skin issue. The doctor hasn’t seen anything like it and i have to take her to a dermatologist. Gage woke up that morning still looking like he was in a boxing match. I decided I needed some wine that night. So after picking Charlie up from school I drove all 3 kids to a winery down the road. I herd them all into the store and request two bottles of the best stuff around. The man informs me they are all out. I slammed my head on the counter. Of course they were all out. That’s how it goes for me. This was the first time I had ever made a trip to buy myself some. I did buy another bottle of something not quite as good but it would do. The girl working happily informed me it had higher alcohol content. Not sharing her enthusiasium I informed her i was breastfeeding and could only actually drink a little bit. I think I saw pity in her face, I accepted it. 🙂
Here’s hoping to a better week next week! Cheers.

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Tinleigh is something else. Her one month check up was great she was 50% on everything and growing fine. The screaming though was horrible. It wasn’t like colic where it was some hours one time a day, it was 24/7. When we would have her in public people would make comments on how cute she was and the boys would respond “she cries all the time”. It was weighing on all of us. If she would have been my first baby I would have been done! The doctor started her on zantac. She was spitting up and you could actually smell the acid. So we hoped that would help. Two weeks went by and there was a little less screaming but not much. The doctor then added prevacid. Tinleigh was also covered in a rash. It came with her baby acne. Started on her face and head and got really bad. It then started spreading down her back and chest. Then finally went down her arms and legs. Once it started on her arms and legs her face and head was starting to clear up. So then I thought maybe she had some sort of virus and it was just exiting her body through her extremities. Made sense in my head.
At her 2 month appointment I was shocked to learn she had only gained 7oz instead of the expected 2 pounds. The doctor was very upset about this and mentioned seeing the GI doctor. I didn’t want to go there yet. The pediatrician also wanted to get her on a prescription formula. I had gone round with the insurance when we tried to get the boys the prescription formula two years ago. I told her I didn’t want to do that so she said she wanted to see Tinleigh in two weeks for a weight check. If she didn’t gain an oz a day then we were going to the next steps of the GI doctor and prescription formula. I left that appointment determined to fatten this baby up. I was going to nurse her every 3 hours even if she wasn’t acting hungry round the clock. Then a good friend reminded me to try rice cereal in her bottle. How could I have forgotten about that with reflux babies? I had done it with both of the boys. I also removed diary from my diet. By the time it was time to weigh her again she was a different baby. The crying became less and the spit up was now minimal as long as she had the rice in her bottle. When I took her in for her weight check she had gained 12oz in 14 days. Good enough! My next problem was that I wasn’t making enough breast milk to keep up with her at this point. I tried alimentum for allergy babies. She screamed and vomited it right up after only having 2oz. The doctor said she needs the prescription formula. I asked about trying soy. The doctor said no way, she feared Tinleigh would have allergies like the boys and didn’t even want me to try soy. We were getting no where with getting coverage for the prescription formula and I couldn’t even get a sample of it to see if it agreed with her. So I bought prosobee. I only gave her an ounce at first. Nothing happened. So as she wanted more I gave her more. She is still on soy! No issues.
During this time I had also cut wheat out of my diet to see if her rash would clear up. Low and behold it did! Why wheat? Just a gut feeling. So I have now joined the rest of my family with a restricted diet. Darn is it hard. Nathan did make a point one evening about it. He told me it’s actually harder for me because I’ve been eating wheat and dairy my entire life. He’s never had chicken and has no idea what he’s missing so he never craves it. I accepted his pity.Tinleigh is now a happy baby and steadily gaining weight. I nurse her on one side while pumping the other. I add rice to the pumped and feed her that after she’s done nursing. If she’s still hungry after that then she gets soy formula mixed with rice. Somedays she wants 4oz of soy after breast milk some days she only wants an ounce. I believe I only produce a little around 3 ounces a feeding for her. She’s on a combo of zantac and prilosec and it works for her. Her skin looks great. She does get the occasional pimple on her face but nothing like she had before.

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Gage was scoped in December the same day as Charlie. We had tried to take Gage off his steroid when we took Charlie off his, but Gage started choking and coughing a lot so he went back on it. Before this scope we had removed wheat and oats from his diet because of his horrible bad scope in July. So we were really hoping there would be improvement.
It took a little longer than usual for the GI doctor to call me after their scopes so I called her. She gave me Charlie’s news with great enthusiasm. Her mood drastically changed when it was time to talk about Gage. Gage’s scope was still very bad and that is why she hadn’t called me. She didn’t know what to do and was trying to figure it out. His mid esophagus had 14 eosinophils and his distal was 54+ and there are fibrosis. Fibrosis is the hardening of the tissue which is what we are trying to avoid and the reason we do special diets trying to find the trigger foods. I got very upset. So it’s more than the wheat and oats that’s causing Gage’s issues. I told her that the only other food he’s eating that was removed before is corn. She reminded me that his patch test came back positive to pork and green beans. So after a long discussion she left it at we remove pork and green beans and keep him on his steroid twice a day. We’ll re-scope him in 3-4 months. At that time if he isn’t better, then we’ll remove corn. So Nathan and I had a talk that evening and we talked about why waiting to take out corn, because that eliminates a lot of everyday things for him. We then decided that we would let him try potatoes. If he did ok on potatoes then we would take out the corn. If he has a clean scope next time we know it’s probably pork, corn or green beans. If it’s a bad scope then we know it’s potatoes.
Gage is currently off the following foods:
Beef
eggs
soy
rice
seafood
peanuts and tree nuts
peas
mustard
celery
sesame
wheat
oats
corn
pork
green beans.
It’s tough. Although having potatoes allows him to have a few flour mixes and cake mixes he couldn’t previously have because of the potato starch. Now if he could just have rice our world would be so much easier.

Since I’ve been neglecting the blog for the last 3 months it’s time for an update on everyone.
Charlie was scoped in December. He has been off steroids for around 10 weeks. His scope came back zero eosinophils! This was a huge relief to us to know the steroids weren’t masking the disease. If they had been masking the disease we were going to have to remove the foods he had tested positive to when he had his patch testing. Two of which were wheat and milk. So it was very important for him to have a good scope.
Charlie has been eosinophil free since last December. He went from not eating 20 foods down to 10 this past year. The GI doctor told us at this point we don’t need to scope him unless he starts showing symptoms or we just want to know what’s going on. We are also allowed to add foods back one every two weeks. We are adding them back in order of least allergic to most allergic. We’ve given him deer and he did just fine. Next will be rice, then celery. From there it gets a little tricky because it’s foods that are typically highly allergic foods or foods we’ve seen reactions on.
Here’s his current do not eat list:
Beef
eggs
soy
sesame
peanuts and tree nuts
seafood with the exception of lobster
all melon
peas
pineapple
going to try celery and rice.

Our family

I’m the average stay at home super mom. Run the daily grind of raising two boys and two girls.

I love coffee, dancing, painting and teaching my children how to grow into the best people they can be.

All three of my oldest kids and my husband have Eosinophilic Esophagitis, multiple food and environmental allergies and the kids all have asthma. Our youngest does not have EoE but does have some strong environmental allergies and chronic urticaria. More recently the boys were also diagnosed with Elhers Danlos type 3.

Dealing with these issues daily is hard but we still LIVE life to the fullest. Nothing holds us back. We play sports, visit animal farms, go out to eat on occasion and travel. We LIVE!

I have started this blog in hopes of helping other families dealing with these issues to see the brighter side of life. Let them see they are not the only ones. By sharing how we LIVE and handle certain situations we hope others will be inspired to try to do the same.